Category: Terminal Illness

So why are we so surprised that a person’s progressive illness has reached end stage (in other words there are no treatments left to try, the body is not tolerating the treatments, the patient doesn’t want to do treatments or the body is in a final decline)? Well, one culprit is that untouchable concept, HOPE. One common refrain that I hear in the hospice world is “we don’t want to completely take away hope”. Hope is a funny thing. Hope can help us tolerate the intolerable, be patient in the face of racing time, take risks in the face of difficult odds. But I think we misunderstand HOPE in a way that give us permission to deny the reality of a situation. HOPE is something that no one can take away from another person. However, HOPE shouldn’t get in the way of honesty, integrity and maturity. Otherwise, HOPE DOESN’T FLOAT. How can we make the best decisions for ourselves if we are only given the HOPE side of the story.

Here’s what that means…….One of the most frequent reasons that physicians cite, in multiple studies, for not being totally frank with patients and family members in regards to prognosis is HOPE. MDs state that they feel they are destroying a patient’s hope for a cure or for remission. Some state that they feel they have personally disappointed the patient and family. At the same time, physicians and other healthcare providers express daily frustration with patients who are not following medical advice. “Why” they ask “are patients not taking their medications, following their diet, working their exercise plan, eliminating their bad habits, adopting good habits………”? They want patients to “buy in” to programs and regimens but few patients do so 100%. I have never, ever heard of a healthcare provider telling any patient something like this…..

“Mrs Lady, your blood pressure is higher than it should be for your age, gender and race. In order to get it under control, I want you to walk at a brisk pace for 30 minutes, 3-4 times a week, I want you to follow XXXXX eating program, I want you reduce your stress level by doing meditation 2-3 times per week, stop smoking and come back to see me in 6 weeks. High blood pressure is one of the early signs of heart disease. If you follow all of my instructions, it is possible that we can reduce your blood pressure to a safe range. This will prevent damage to your kidneys and heart. However, if not, your blood pressure will continue to be high and I will have to use medications to control it. That can work really well if you never miss your medication and you stick to the diet, exercise, etc without fail. We could prevent any reduction in the quality or quantity of your natural life until you’re so old, you pass just from being old. However, over time, and especially if you aren’t 100% compliant, as you age, even with the diet, exercise, meds, lifestyle, it will become harder to control your BP. We will have to revisit all of your regimen several times to try to keep it in a safe range. If we don’t do that, over time, the high blood pressure will start to damage your kidneys and make your heart have to work harder than is normal. Eventually, your kidneys will become less and less able to do their job, your heart will have to work increasingly harder. At some point, your kidneys will start to lose function which makes every other part of your body suffer. Your heart will lose it’s elasticity and over time, you will develop a group of symptoms that are called heart failure. Heart failure starts out mild and can be managed with multiple medications and therapies but it cannot be reversed. Over time, it is also progressive and at some point, it will cause your heart to give out. Your cooperation in this health regimen is critical for delaying this outcome until you are very very old. If you are diligent and you work with me with a high degree of commitment, then you can grow old with a very very slow health decline. Your quality of life will be preserved as long as we are able, at this time, to preserve it.”

What Mrs. Woman gets is a conversation like this…..”Mrs. Lady, your blood pressure is a little higher than we would like it to be. I want you to try to exercise, lose a little weight, lower your stress level, and I will give you a medication to lower your blood pressure so we can get that under control. Come back and see me in 6 weeks.” And six weeks later “Okay, your blood pressure is better. Stay on this medication and hey, I’d still like to see you a few pounds lighter.”

The big difference is this…..One physician is telling the whole story, the consequences, the implications of altering lifestyle or not doing so. The other has given the impression that the problem is fixed…..gone away.

Why wouldn’t any decent healthcare provider give us the whole picture from the beginning. There is this idea that doing so dashes HOPE. It has much less to do with with the quality of the healthcare provider, according to research.

I actually had to leave a space there……Read it as a pause. Roll it over in your mind.

In study after study, physicians indicated that they don’t want to dash a patient’s hope, be a gloom and doom provider, paint a dark picture. But why??????? LET ME BE CLEAR…..I am not trying to paint healthcare providers as bad people or as having no ethics. In trying not to deliver bad, painful, difficult news, they overshoot the mark and don’t know how to tell the whole truth. It’s the mistaken idea that knowing the real deal will somehow make patients give up. It is the incorrect hypothesis that if we know the possible outcomes, we will just quit trying to overcome. How much more likely would it be that a patient makes different life choices when we give them the truth, ugly as it might be. I have met so many families who say to me “the doctors never told us that XXXXXXXXX could happen”. Here is an actual quote from a family member, “……I knew that his liver was failing and I just kept waiting for them to help him……..they never told me he was going to die…….”. Here is another “They told me that the dialysis was keeping him alive but he died from kidney failure anyway. We were not expecting that….”. Patients and families are angry at healthcare providers, I mean really really angry. Why? Because everything isn’t fixed with a pill or a treatment…….and, no one really honestly told us that it couldn’t completely be fixed. Think about it. Once a provider says there is nothing else he/she can do, many patients start looking for a second opinion, another MD, another hospital, another treatment. They have not been made aware that coming to a “no more options” point is a reality associated with progressive illness (or that the illness is part of a progressive process). And being told there are no more options makes us angry, frustrated and desperate.

But the truth is this……..for the patient and families I have worked with, knowing the whole truth has been liberating. It gives them the ability to make decisions based on the facts as they are. And for many, it is the first time that what they have been experiencing makes sense. The truth actually illuminates what they have seen but have been unable to explain. And here is the really big implication of not knowing the whole story. Since we don’t hear the truth, we see no reason to prepare logistically, mentally, physically or emotionally. And the progressive disease moves forward and we don’t draw up a Power of Attorney. And the symptoms get worse and there are complications and we don’t have a family conversation about our wishes in case our prognosis turns poor. And when we are incapacitated, those we love don’t know what to do and keep looking for someone to reverse the progressive disease.

In healthcare, we dread it when patients consult Dr. Search Engine on the internet and learn “too much” about their health issues. Well, maybe that is not such a bad thing if the information is accurate. Maybe it says to the human being “You are not immortal. But, you are empowered with the facts and you CAN have HOPE that is based in reality. You can also be prepared regardless of outcome.”

Almost every day, in some part of my city, I spend time with patients and families who don’t know what to do. Receiving devastating news from their healthcare provider, they do not know where to turn for help or how to begin to move toward a plan. Maybe they have been told that they have a progressive disease that is in its end stages. Some have been told that they can no longer tolerate treatments that were supposed to cure them (maybe). Some get the first news that a terminal illness has been at work inside them, without their knowledge. To say that they are overwhelmed is the ultimate in understatement. (It is both the worst role and the best job in nursing….to be the interpreter of the hard, painful truth and the guide to a path forward.) But it doesn’t have to be this way, it’s a situation we humans, the majority at least, have created for ourselves. The sad truth is that it takes a feat of incredible planning, carefully chosen language and often a crisis to get an individual or a family just to discuss end of life. But NO ONE DIES FROM TALKING ABOUT IT. As a hospice nurse, I feel an obligation to effect a more optimal outcome for end of life. That sounds odd as I write it…….but from experience I have learned that the end of life, death, is definitely not the worst thing that can happen to a person.

This blog marks the beginning of an open discussion about the end. It’s nothing new. Talking about end of life was once part of our collective dialogue. It’s not hard to imagine that the earliest humans could see that members of their groups, clans, tribes, packs or families were born and died. Even the simplest thought processes allowed humans to see that other humans came into the world and at some point, left the world. Larger questions about where they came from and where they went are the foundations of the world’s great religious questions and answers. (Let me make it clear, this is not a discussion about who is right and who is wrong when it comes to theology). But like birth, to even the earliest people, death was normal, expected, predictable. In fact, its possible to believe that the less they understood death, the more they accepted it. It was a given that it was going to happen to everyone and could happen at any time. Why? Because there was no reason to believe otherwise. Everyone they knew had, in fact, been born. And, stunner, no one they knew had ever escaped death. Until these inevitable truths changed, there was no reason to expect anything different. They developed rituals, traditions and practices around birth and death which served them logistically (such as burial, cremation), emotionally (such as mourning, ghosts) and spiritually (such as heaven, limbo and hell). What’s important to realize is that no one believed it was totally avoidable. Leave that to modern, educated, sophisticated society.

What’s really amazing is that we now need experts to write guidelines on effective structures for having productive end of life conversations. There are so many books and professional papers on how to talk about end of life. But we already know how to do it. We are just out of practice. And there are a lot of reasons for that (to be discussed in future blogs). How do I know? Well, women and men can still sit for hours and discuss pregnancy and birth experiences without feeling uncomfortable. Without knowing it, we are preparing those around us, building realistic expectations, opening the door to questions and confirming that birth is a part of the human experience (any kind of birth here is a birth….vaginal, cesarean….another thing I will not debate). We can do that with death. Again, NO ONE DIES FROM TALKING ABOUT IT. But like birth, little by little, open, honest conversations can help us to prepare, build realistic expectations, open doors to questions and confirm that death is another normal part of the human experience.

Why a blog? It’s safe. It’s not a hard conversation with someone you love. It’s just some shared thoughts from a hospice RN. If it frightens you or makes you uncomfortable, walk away for a bit. Chew on it, process it. We all need that, it’s okay. But you might find that you want to discuss it more until you find your own clarity. That is what happens to the majority of the families I meet and assist. Remember, NO ONE DIES FROM TALKING ABOUT IT.